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He had been so excited in the weeks leading up to Saturday. But when Saturday finally came… From the minute he woke up, it was all “I don’t want to go surfing today.”

The anticipation is sometimes just too much. And most of the time, when Noah gets an idea in his head, forget it.

But I just tried to keep it casual. Ignore the protests and not make a big deal about what was coming up. Thankfully, he was in a later group. Plenty of time to adjust and play before he had to go.

And when it was time, he just went.

We handed him off to the sweet girls who get him dressed in his wetsuit and life jacket. And like every other time, Noah just surrendered. No questions, no hesitations, no protests. A little giggle about how cold the wet wetsuit was, but that’s it.

I wish I knew their secret.

We had a bit of a wait at the water for a surfer. I expected him to lose his nerve. I expected a fit. Instead we got a lovely volunteer who held his hands while he jumped in the waves.

And then Nick and Izzy came in. Nick Hernandez is a super cool long time Surfers Healing volunteer. I was pretty excited that he might take Noah out. But another boy was ahead of Noah & went with Nick.

And Noah got Izzy.

Which is just so cool. This man. This wonderful man and his beautiful family have dedicated their lives to giving back to families like ours. And at the same time, being a family like ours! It’s inspiring.

Noah had a blast. He’s smiling in almost all of the pictures (400+) that I took. He looks relaxed. (!!!) He came out begging to go back in. At one point, after I told him that he couldn’t go again because his turn was over, he told me to pretend that his name was Caden. So that he could have another turn.

The whole day was fun. I can’t get enough of being on a beach with hundreds of other families and feeling no judgement. Just happiness. You can’t help but smile as you look around. So much excitment and wonder. Seeing these tough looking surfer guys, who normally would intimidate me to no end, being so excited about a ride they just took with one of our kids. It’s unreal. The volunteers (and there are a lot of them!) are all so amazing.

They should hand out angel wings and halos along with the red volunteer shirts.

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On Saturday, 4/23/11, Team Noah will be participating in the Walk Now for Autism Speaks at the Rose Bowl in Pasadena. We are so excited!! Not only to support such a great organization, but also to spend a morning celebrating these special kids. Please consider supporting or joining us!

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-On the way to school this morning, I asked Noah if he wanted to go to the train park after school. He told me “Yes! But first school and then Train Park.” Just like that. Which looking at that sentence now, doesn’t seem like such a big deal…

-At the train park, there was another little boy with his dad. He was the same size as Noah so I assumed that he was 5 or 6. Noah was playing with the boy on the train & then went to sit next to the man…. talking to him & telling him about the train.

He asked how old Noah was. When I said 3, he told us that his son was the same age. Another big kid!

He said “I figured he was younger than he looked because he runs like a 3 year old & talks like a 3 year old.”

Then he said “You must get a lot of looks… people assuming he’s older than he is…”

“Yes we do! Especially because he has some issues/ADHD…”, I said.

(oh he has no idea the looks I get with Noah sometimes….)

“All 3 year old boys have ADHD. He’s fine.” He said.

!!!

HE TALKS LIKE A 3 YEAR OLD. HE’S FINE.

That guy had no clue how important those words were. Here’s a stranger, interacting with my son…AND NOT NOTICING (or at least not reacting to) his differences. And he was a man! Men tend to be more judgmental than women as far as Noah goes.

Even if it isn’t exactly true…. for a stranger to tell me that he’s fine & not to worry. Seriously. That guy is lucky that I didn’t hug him right there.

-Then we went to Target. Where Noah threw a huge fit right as we walked in over gumballs. I wanted to run back to the park & find that man. But we got through it. And he was fine the rest of the time shopping. Even scored YET ANOTHER Thomas train from Grandma.

Stupid gumballs… killed my that.dude.called.noah.fine buzz.

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Having a child with special needs is hard. And rewarding. Faith stretching and future blurring. Utterly challenging and relationship deepening. Scary and full of unknowns. Dream altering and hope holding. Always different yet full of new normals. Beautiful and amazing.

Background:Noah lives with his parents and 3 siblings. He was born at full term with no complications. His mother indicates that he has fluid in his right ear and will be evaluated to determine if tube placement in necessary. He does not take ongoing medication. Noah participates in the Early Start program at Casa Colina for 6 hours a week.

Intellectual Assessment: An estimate of Noah’s cognitive functioning was obtained using the Bayley Scales of Infant Development- 3rd edition. His cognitive composite score of 95 falls within the average range of nonverbal cognitive ability. Noah was able to focus on and attempt most of the items that were offered to him. He demonstrated the ability to assemble puzzles consisting of 2 pieces and pretended to lick the ice cream cone puzzle. He engaged in simple pretend play using a doll. Noah fed the baby and used a cloth for a blanket while saying “night night”. He matched pictures correctly on two out of three trials and was able to identify a previously viewed picture. He was able to match color disks to the appropriate colors. Noah sorted by color but did not show interest in the task requiring him to identify objects by color. He did not identify objects by size but is reported to be working on this skill. He imitated a two-step action. While his counting was inconsistent, he did assign one number to each block in attempting to count them.

Adaptive Functioning:Noah feeds himself using utensils with some spilling. He is learning to remove clothing items and can take off shoes, socks and diaper. He cooperates with dressing. Noah is in the process of toilet training and will sit on the toilet. He brushes his teeth with help. He wipes his face and nose. Noah requires assistance to complete bathing. He will pick his toys up with the clean up song. He also takes things to the trash upon request. He was noted to have good coordination in the visual-motor skills required for him to hit a ball with a bat.

Social/Emotional/Personality Functioning:Noah’s behavioral presentation was evaluated through parent interview and observations of his behavior during evaluation. His mother was asked to complete the Gilliam Autism Rating Scale- 2nd edition (GARS-2). The examiner administered the Autism Diagnostic Observation Schedule (ADOS). His rating scores fell within the possibly autistic range on the GARS-2 and within the non-autistic range on the ADOS. Noah’s behavioral presentation does not meet the DSM-IV-TR criteria for Autistic Disorder.

Noah demonstrates a good level of social interaction. He is affectionate with his parents and extended family. He plays with his older sister. His mother indicates that Noah likes to do songs with gestures and will participate in circle time activities with other children. He will become “instant friends” with other children at the park. He plays well with his two cousins who are near his age. Noah looked when his mother called his name. He would give things and showed toys to others. He participated in playful activities initiated by the examiner.

He has a history of a significant delay in language development. Noah first used single words at 18 months and phrases around two years old. His mother notes that for a long time he would not repeat words spoken by others unless he could say the word perfectly. An occupational therapist has pointed out that some possibly difficulties related to the mouth muscles which may affect his ability to produce words. He is reported to drool, chew on many objects and to often hold his mouth open. Noah has much improvement in his communication skills within the last month. He is now able to produce spontaneous meaningful sentences. There were no autistic-like oddities such as echolalia observed. His mother notes that Noah’s language has always been meaningful. He does continue to have articulation difficulty. He understands and follows directions. Noah demonstrates an appropriate use of gestures such as pointing, waving and sign language for “please.” His use of eye contact was inconsistent which seemed to be related to him being active. He is reported to have good eye contact with family members.

Noah engages in functional and pretend play with toys. He likes to stack blocks and knock them down. When asked about repetitive activities, his mother reported that he watches the wheels on cars and trains move at eye-level. Noah will pinch his finger when excited. He is also reported to be overly active. He likes to turn in circles, walk on his toes and put objects in his mouth.

SummaryNoah is a delightful child. He has the benefit of having loving parents who are interested in learning new ways to facilitate his development. He currently demonstates nonverbal cognitive abilities that fall within the average range at the level that would be expected for his age. He does have a history of delay in language development. His behavioral presentation is inconsistent with a diagnosis of Autistic Disorder. Noah demonstrates a level of social interaction which exceeds the level that is typically seen in a child with a diagnosis of Autism. He also has meaningful use of sentences and gestures used to communicate with others. It is recommended that he be evaluated to determine the appropriateness of special education preschool services with a formal speech and language evaluation. He should continue to participate in occupational therapy interventions as appropriate.

Recommendations:1. Ineligible for IRC services under the criteria of mental retardation or autism. 2. Assessment for appropriate special education services with a formal speech and language evaluation.3. Consider continued participation in occupational therapy services as appropriate.

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So I know the title of this blog is “the six of us”. And I know I seem to only be able to write posts about one of us… that one being Noah. Why? Because I am worried about that boy! And that worry tends to pound down every other thing in my head until I can barely breathe.

Today the regional center psychologist ruled out Autism. In her words, “he is clearly not autistic.” He had a full evaluation today. He was relaxed. He was himself. It was a fair evaluation. I’m happy.

Noah sat when he was supposed to sit. He finished every task asked of him. He talked & played & laughed & smiled. He shared & pretended & charmed the pants off her. He also wiggled out of his chair when he was done & ran out of the room at one point. Typical Noah.

He scored a 5 on the diagnostic test. 7 is the mildest on the Autism Spectrum (PDD-NOS). She said he scored as high as a 5 because at one point, she was trying to make eye contact and he was more interested in a book. But it was a Thomas the Train book & she knows that she can’t compete with a Thomas book. She said his score should be down around 2 or 3.

I will get copies of the report in about a month. I’ll share more then. But for now, his diagnosis stands as speech delay/SPD. She thinks he will qualify for speech therapy and OT through the school district.

Exactly what I wanted. Without the fight. How anti-climatic.

I know this can all change any time & we’re free to go back to the Regional Center to have him re-evaluated. I hope it doesn’t come to that. But we’ll see.

Side note: Noah is being evaluated for ear tubes tomorrow. His right ear is full of fluid from ear infections and his doctor thinks the muffled hearing might be contributing to his speech issues. Fingers crossed for tubes!

Now don’t I have 3 other kids to rave about? More varied posts coming soon. I promise!

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He’s added at least 5 new words, started finishing words instead of only pronouncing the first syllable & said his first full understandable sentence. He’s also starting to repeat words that we say. Something that is key to language development & something he has never done.

That stuff is gold.

We first tried it right after he turned 2 & also noticed an immediate jump in his vocabulary. But we got lazy with it as he kept improving. He was off it for about 3 months. And he stalled again in his language. That’s proof enough for me.

I still can’t bring myself to actually cook fish, but I have a new respect for it.

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We were early so Noah ran around on the playground for awhile. There was a little boy out there with his mom and therapist. Noah wouldn’t leave them alone. He was pulling the mom around showing her the airplanes, taking a rubber duck to the boy, showing him how to slide down the slide, making the duck slide down.

During class, he was able to sit still longer in circle time & wasn’t such a wild man. During speech & work (cognitive), he did things that his report said he couldn’t do yet. I swear it’s like he knows when I’m feeling beat up & he’s throwing me a bone.

He had fun in the gym, as usual. Although he almost broke Kimmie’s nose, but it wasn’t his fault. He jumped up at the same time she bent down. Poor little thing. No match for his huge head.

Swinging with Kimmie, obviously forgiven

After class, they went back out to the playground for awhile. He was himself… not the kid they usually see. It was nice to be able to talk to all his teachers in a more relaxed setting. They all seem to be quite entertained by Noah. And exhausted by him. I got the usual “How do you do this all day?!!”.